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For Mast Cell Knowledgeable Peeps :)


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Last night I cooked italian sausage with cabbage and onion. It was a Paleo recipe and is actually very good. I ate around 4;30 and then had to attend my daughters dance performance at her studio. It was a bit stressful as the entire parking lot was full and people were parking long distances and walking. The whole process did make me a bit anxious as there are a ton of people and kids running around and it is always chaotic and loud! Either way I made it through the performance just fine and drove home after. I was hungry when I got home around 7:30 and at another plate of the italian sausage. I had forgotten to put it away and left it sitting on the counter. I also ate another small plate around 10;30 pm right before I went to bed. I know that's a lot, but I am way underweight and constantly hungry. Especially at night.

Went to sleep with no problem, but woke up at 1 am with extreme nausea. I immediately felt shaky and tense and then felt the urge to use the restroom. It was loose stools, but after the nausea went away. My bp spiked to 140/90 and I shook in bed for about 20-30 minutes until my bp returned to 96/65 and I fell asleep.

Is this just a POTS thing or is this a MCAS thing? I don't know how to tell the difference! Help!

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It could be an MCAS episode.....mine are very similar......benadryl usually knocks me out of one....when I was diagnosed I was told that many spices can trigger mast cells and that I must never eat cooked food that has been left out or leftovers because they are very high in histamines. If I am going to eat leftovers they must be from a frozen state. Apparently even after 1 hour a lot of foods double in the amount of histamine so if you know you have an issue with mast cell it may be a good idea for you to stay away from leftovers and spicy food. A good website I use for reference is

http://www.urticaria...ksinc.com they give you a list of restricted and non-restricted foods regarding histamine. Although histamine is only one of many receptors that trigger in MCAS.....fun stuff NOT! ;) hope you are feeling better today!


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I think your question is the million dollar question! It could be from either one that's why you need to seek out a doctor familiar enough with MCAD to give you an accurate diagnosis. I have both and POTS is just as likely to make your GI tract malfunction as MCAD is. I wish I had a clearer answer than that.

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It's hard to say. I'd have been sick both from eating sausage and eating so late at night.

imho, because having a bm eliminated your symptoms your body just needed to get rid of whatever

it considered toxic. Mast cells don't need to be involved here.

I understand your constant hunger tho. How about sticking to easier to digest foods that late at night ?

I do well with peeled apples. Also, eating more meat throughout the day should help. Can you eat nuts

and seeds ? There are flax bread recipes on the web that can help satisfy your hunger.

Tc ... D

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It is the million dollar question isn't it?!

I am in the process of making an appointment with Dr. Afrin, but mid February seems to be the first available for a work up. I also was on the phone with my Vanderbilt dr 4 times last week and they still have not called to schedule my appointment. They are so unorganized! Of course all she wants to do is re do the same two tests I've already had. I still can't figure out why Vandy is considered a great hospital. I have not had that experience at all!


Here is my scenario, if I don't eat right before bed I will wake up around 2-3 am in the morning either having a shaky low blood sugar episode (feels different from last night) or I wake up starving and have to get up and eat in the middle of the night. Sunday night I went to bed hungry and ended up being wide awake from 2 am to 4 am, so normally I eat turkey, flax crackers with hummus and half a peeled apple at 10pm. That will usually get me through the night. Sometimes it's still not enough. I have to have hearty food. Protein with fat is usually the only thing that will take away the hunger pain.

I am having a very hard time with food because of my diet being so limited with all these reactions. My OI is usually better when I don't eat much. Obviously thats not going to work! No, unfortunately I don't digest nuts very well and I developed a mild itchy allergic reaction to sunflower seed butter that I was trying to replace my nut butters with! UGHHHH

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